Yet even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.

Effective management and use of health data must contribute to the improvement of the health of individuals, families and societies. I echo the comments of Chris Gibbons of Johns Hopkins Urban Health Institute, who emphasizes that health data includes the life experience of the individual, which encompasses—but is not limited to—clinical encounters.

Through my work with Project HealthDesign, I have learned that clinical data tell only part of the patient’s story. We must also value any data that the patient values. Patient-defined, patient-generated data such as observations of daily living (ODLs) contribute to a full picture of the patient’s health and complement clinical care data.

ODLs serve as personal health sentinels, which give individuals cues about their health or alert them to take personal health action. Because they arise from the patient’s experience, not the clinician’s perception, ODLs may be the most truly patient-centered type of personal health data. I believe the standards and structures PCAST recommends will prove sufficiently robust to handle even these types of data.

From its beginning, Project HealthDesign has advocated a vision of health information technology (HIT) in which applications draw data from many sources and synthesize and present it in ways that guide action. As bodies such as the ONC and FDA deliberate the PCAST recommendations and use them to guide the criteria for demonstrating meaningful use of HIT, I exhort them to hold fast to the fundamental purpose of effective health data management, which is to improve health.

Yet even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.

Effective management and use of health data must contribute to the improvement of the health of individuals, families and societies. I echo the comments of Chris Gibbons of Johns Hopkins Urban Health Institute, who emphasizes that health data includes the life experience of the individual, which encompasses—but is not limited to—clinical encounters.

Through my work with Project HealthDesign, I have learned that clinical data tell only part of the patient’s story. We must also value any data that the patient values. Patient-defined, patient-generated data such as observations of daily living (ODLs) contribute to a full picture of the patient’s health and complement clinical care data.

ODLs serve as personal health sentinels, which give individuals cues about their health or alert them to take personal health action. Because they arise from the patient’s experience, not the clinician’s perception, ODLs may be the most truly patient-centered type of personal health data. I believe the standards and structures PCAST recommends will prove sufficiently robust to handle even these types of data.

From its beginning, Project HealthDesign has advocated a vision of health information technology (HIT) in which applications draw data from many sources and synthesize and present it in ways that guide action. As bodies such as the ONC and FDA deliberate the PCAST recommendations and use them to guide the criteria for demonstrating meaningful use of HIT, I exhort them to hold fast to the fundamental purpose of effective health data management, which is to improve health.